“It’s just shocking!”

My health visitor is probably the first person that’s wanted to help me take positive steps to be an independent mummy. I’ve met her just three times now and she has been nothing but lovely to me each time.

She tells me how well I am doing, how beautiful Squidge is and how you can see she’s so well cared for, sociable and adaptive. She hasn’t looked at me funny when I’ve explained that both Kev and I have been stretching out Squidge’s clothes by lifting her in the middle like a parcel from the stork. We’ve both been lifting her the same way so it doesn’t phase her when she’s home alone with just me, with no other choice. In fact, my health visitor smiled and said “She obviously feels very safe with you!”

Each time she looked at Squidge and she beamed back, it was like Squidge was telling her “My mummy’s doing a good job you know.” I could have burst with pride.

hidden-disability

Then the health visitor asked me how I got on with her recommendations of contacting Scope & asking for an Occupational Therapy assessment through the Council’s Adult Services.

The answer was short and sharp.

“I’ve tried. There’s nothing.”

She frowned. “What do you mean?”

“Scope have no provision for disabled parents at all and Adult Services haven’t picked up the phone yet.”

“What?! That’s awful.”

“Yep. Seems like we’re on our own.”

But my HV didn’t want to stand for that. “Go to the press. Disability is hot on the agenda right now.”

I explained about my blog and how I hoped it’d make my parenting journey a little less lonely if I could see other disabled people successfully parenting.

She asked how the loneliness of the situation was making me feel.

I was honest. I’m loving being Squidge’s mummy, but  another issue I have with my disability is that it does not feature in the extreme of what society envisages a disability to be.

“I’m not at home in a wheelchair, unable to work with carers around me to help. I have a job to hold down and my own health to maintain. We’re completely on our own.”

“Go to the press.” she said again. “Disability shouldn’t only be helped at extremes. It’s great that you’re so independent!”

She left promising to contact Social Services herself, lamenting that my case would get more attention if she referred under Squidge’s name through children’s services, rather than mine through adult services.

I’m not surprised though. It seems to have always been this way. Scope and Bobath Wales have lots of help available to children with CP. But those children inevitably grow up and then what?

We’re phased out of the system at 16. Naively, when it happened to me at the end of school in 2005, I honestly believed it was because my condition was maintained, and this was both the best and worst my CP would be. Nobody gave any warnings about the aches, pains, practical and social struggles that are part of getting older with CP. Is it because they don’t know…. or because no professional wants to admit there’s nothing out there?

I say all this at the grand old age of 27, when some days I’ve felt more like 87. What the Hell will it be like 10, 20, 50 years from now? Does anyone know? Will anyone say?

But before any of that, my daughter’s name will sit on a file in Social Services, which even then my Health Visitor admits may take several months to get looked at. How is that even the slightest bit helpful?

And I felt so silly for having to ask, in the most jovial manner I could muster: “They won’t be casting a critical eye will they?” which thankfully she understood was code for: “They won’t take her will they?”

In my more rational moments, even I would be able to call that an over-emotional and exaggerated question. But the thing is, when it comes to my ability to care for Squidge, I’m losing the ability to remain rational. She is my daughter, the best part of me. I managed to carry her safely inside me throughout pregnancy despite all the challenges, physical and sometimes emotional pain that entailed. It’s only now that she’s here, it feels as if the universe is giving me a big fuck you for becoming a mother because I recognise that I need to ask for help.

That in itself is a massive thing for me, and if it was just help to benefit myself, then I’d probably drag my feet and stubbornly insist that I can manage. But this is for the good of Squidge. She is mine and it is my worst fear that someone would deem me unfit to be her mummy when I put so much of myself into getting her here safely. It would end me.

They cannot have her.

Me & Kev are quite competitive in our relationship – who can hug the tightest, who can sneak in the most kisses. We say that everything in life is a competition and each of us is here to win. I always thought that was said in jest, but you know, when it comes to the one thing I hate most about myself having the power to affect my Squidge, I must win. I will win. No-one else has the right.

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